Tuesday, December 20, 2011

i'm not talking about the artist known as m.i.a. i'm speaking of myself. lots going on with regards to the holidays coming up. i've been busy helping out in santa's workshop lately. i'd love to give you a sneak peek of what i've been up to, but i know some recipients read this blog - and well, that'd ruin the surprise wouldn't it?

i'll be back to show off the goods soon enough.

i'll also be back to fill you in about our appointment to the developmental pediatrician. yes! we didn't have to wait until march 2012 after all! we got in last week, due to a cancellation and well - the 90mins (!) with the dr. was sort of a let down. that post will come later in the week - i hope. i suppose it all depends on what things i can accomplish during this week.

christmas concertsewingbakingwrappinggoing out to look at christmas lightsfamily time

wow. lots to do, on top of our normal day to day stuff.i'm not worried. i'm even going to have fun doing it all. deep breath and... go dance!

Thursday, December 8, 2011

growing up we had a mustard yellow fridge. i don't remember having too many magnets on our fridge back then, but i'm sure if i thought about it long enough, i could remember specific magnets. my aunt had a fridge covered in fake food magnets.

when we lived in toronto we had a stainless steel fridge - it wasn't magnetic. we had a bare naked fridge. it felt odd to have NOTHING posted. no pictures of cute babies. no little notes. no funny magnets. our magnet collection hung out on our filing cabinet in our basement office.

we moved 2.5 years ago. our home has a small kitchen. it's cozy. it's not very well thought out, i mean really you can't throw something in the garbage if the dishwasher is open. if someone has the fridge open you can't get by. but. our cozy kitchen has a white fridge with lots of magnets on it. homey. love it. especially the recipe ones. with three of them, it's the start of a collection, wouldn't you say?

Wednesday, November 16, 2011

we have two awesome kids. they’re both so creative. love to draw, play with stickers, do crafts, make forts. and they’re oh so loving. miles likes to tell me, “i love you mom!” out of the blue at least 10 times a day. i never get tired of hearing it. and ozzie? if you tell him you love him, his response is, “i wov you mo-ar!” who taught him that? whoever it was, thank you because some days it’s the best thing to hear. they both love to snuggle and read books. they’re headstrong and independent. and rowdy. the wrestling. never. stops. even if we’re visiting friends, i’ll look over and there’s ozzie tackling a 21 month old little girl! whoops, sorry sandra. also: thanks daddy?

these boys are our everything and one has right sided hemiplegia. this is what our pediatric orthopedic surgeon has now told us. phew! we’re still not sure what happened for him to have it. he has a mild case at that. his prognosis is amazing and if he wants to play sports he will. we have yet to meet with a neurologist or a developmental pediatrician, but we are on waiting lists to see these people.so you may be wondering, what is hemiplegia?HEMIPLEGIA in infants and children is a type of CEREBRAL PALSY that results from damage to the parts (hemispheres) of the brain that control muscle movements. This damage may occur before, during or shortly after birth. for more info, if you’re interested can be found here: http://www.chasa.org/hemiplegia.htm?gclid=CJ-1i-OBvKwCFcLAKgod6SuYpAi’ve recently joined their online discussion group, hemi-kids & now have access to an archive list of questions, concerns, etc.it’s a specialized online mailing list for parents of children who have mild to moderate hemiplegia, hemiplegic cerebral palsy, or hemiparesis. holy resource batman! it’s like a long lost family member. it’s just what we need right now.

therapy!!

so his physiotherapist and occupational therapist love ozzie - how could you not? he charms everyone he meets and i know i’m biased, but he’s super cute too. he’s developing into a boy who’s a little shy at first but will soon be giving you hugs and kisses and will cry when you leave. below is an update of our latest appointments.ozzie's getting an AFO! Ankle foot orthotic. this will help keep his foot at 90 degrees and help with his gait. for the outside of his brace he picked cars and trucks and helicoptors, tractors! so it is pretty fun, and as he gets older they have more conservative type prints. camo, plain colours, etc. the brace they chose for ozzie was one for athletic type kids, he'll have a bit of a spring in his step, much better for running too. he'll have to wear one til he's done growing. how long is that? til he's 20 or something? the physiatrist couldn't believe how much range he has in his foot (which is a good thing). usually kids with hemiplegia are very tight. his is a very mild case, so to the therapists - he's a dream. he can do a lot, he's their superstar. and yes he is our superstar too, but for us this is hard, big, frustrating news. we’re still working through all the emotions here..with our occupational therapist we also discussed constraint therapy.constraint therapy is for people who have had a stroke: by constraining their unaffected limb, they are forced to use the affected limb. the purpose is to create new pathways in the brain and thereby increase said limb’s functionality.first method of constraint therapy: putting a mitt on his good, dominant hand (left hand), with splint material on the palm so he can't grip. it's just what it sounds like, a mitt, velcroed at the wrist so it doesn't slide off, so he can't take it off, then sitting and doing activities so he can use his weak hand more. ie. putting blocks into bucket, picking up things one by one (cheerios, small toys, etc). repetitive motion to get his hand moving, gripping and working. this therapy is only as good as his temperment but also the parent. we will set aside time to sit with him with a list of therapeutic activities - fun stuff to him. if he throws a shit fit, we stop for a bit but try again. ozzie did well with it on at o/t, however it was only for a short period of time. the o/t gave us a piece of splint material so I could make one myself. she wants to take a video of ozzie doing certain activities to really see how he's using his hands and that's at our next appt. on Dec. 6th - once that's over we'll go ahead with the constraint mitt therapy at home.the second constraint method would be to cast his good arm (left arm). a full on plaster cast from the tip of his fingers to his armpit. They do this type of therapy for the same reason as above. he would have no choice but to use his weaker hand at that point. this would last for 3 weeks or so. our concern at this time is with him falling. he's still not steady on his feet 100% of the time and he uses his hands to catch himself when he falls. plus now with the addition of his afo, right? so we'll reassess this if the mitt isn't for us and doesn't work, but at a later date, as he gets older.

so there you have it.

obviously, ozzie is still our beautiful child and always will be. it’s just recently with meeting our pediatric orthopedic surgeon, the official diagnosis of hemiplegia, the casting for the afo, and up next getting the afo and ozzie actually wearing the brace that this is all too real, and at times a LOT overwhelming. the fact that this journey ozzie is on, is not just a temporary one but one for the rest of his life - i think this is what is hitting me in a way i never thought it would. it’s hard. this year has been a rollercoaster. one that you can’t really stop. i’ve said this a million times this year. but it’s true. and i’m sure i’ve aged at least 5 years and need a makeover. ha. but seriously, thank you for all your support, your notes of encouragement, emails. everything. because that’s what we really need on those days that are full of too many tears.

Tuesday, November 15, 2011

miles did a few drawings for this critter. some of those drawings were just too darn scary. once i found a drawing of a monster i didn't mind, i improvised and used my creative license to turn him into a more friendly looking guy.

this one was also a gift. there was a baby shower for a friend of ours over the weekend and again when i finished sewing this dude i proudly showed it to miles and he was speechless, with a huge grin on his face! sucess! he liked it. and named him, "cucumber."

but.

the grin turned into a quivering lip.

"nooooo! this one is for the BABY!," i said."but mom..., ..........." "BABY!""um...... okay mom. but can i at least snuggle with him at bedtime?"

this creative endeavour - of creating monster stuffies from my kid's drawings and possibly selling them? well, i may end up with a house full of monsters.

Monday, November 14, 2011

last week i asked miles to draw a monster, which i would then turn into a soft cuddly monster friend, and we'd then gift it to a friend's baby. he drew the monster as asked and was quite proud of his work. he instructed me as to which colour fur the monster would have, what the eyes would look like and how long the arms would be. easy enough. once i finished the project, i showed him my handiwork. i was quite excited and even asked miles what he'd name the little guy. "kiwi," he responded. aw. cute, i thought.

however. almost immediately - the tears started flowing. sobbing ensued. he was gasping for air! oh my, little buddy.

Thursday, September 29, 2011

another birthday! time to celebrate! and by celebrate i mean i made a list.also: this list was totally inspired by katy (@katyinthehammer) and you'll find her over here. so thank you katy. your list is inspiring. and i hope you cross all your things off, as i hope i can cross all my things off too.

so it's a list of things i want to accomplish *ideally* before my next birthday, but really i am extending this "deadline" to the birthday after that. when i turn 35, the year 2013. and they're things i want to do anyways. this is a bit of motivation to really get my butt in gear to get er done...

so here goes: 101 things i want to do before i turn 34 (ideally) or 35 (realistically)

Tuesday, September 20, 2011

it’s hard to fully encapsulate in words the feelings that are going on right now; the last few months have been a roller coaster ride full of every possible emotion. from one appointment to the next we seem to have more questions than answers. some days i feel like i’m on autopilot waiting to check the next box off the list, waiting for the next appointment, waiting waiting waiting the next the next the next. i’m having a harder time just enjoying “the now.” i need to snap out of this, i need to enjoy the now instead of waiting for the next thing to come along. snappity snap. things could always be worse and i’m oh so grateful for my life, for my babies and my darling love of my life, brendan. i want that to be said. this isn’t a woe is me post. this isn’t an oh i feel sorry for erin post. this isn’t anything of the sort. this is me. sorting out what’s going on. my feelings. my heart. on paper.

i’ve been meaning to write and put all of this into context. into an easy to understand pie chart or diagram of sorts. but that won’t happen. so typity type type. maybe by doing this it’ll untangle my own brain. but right now it’s so jumbled up in my head. one minute i want to hop skip and jump down the street happy happy, the next i want to curl up into a ball and cry myself to sleep and ask why? why? why? but that doesn't really help anything does it? also: a first for me, i bought a big calendar to stick on the fridge to write things down and a day planner for my bag. i used to store all the info i needed up in that old head of mine, but now? too much going on. so here we go. i shall bring you up to date:

ozzie’s actual condition is called:

spastic diplegia and hemiplegia NYD. as per our pediatrician.

a la wikipedia: Individuals with spastic diplegia are very tight and stiff and must work very hard to successfully resist and "push through" the extra tightness they perpetually experience. Other than this, however, these individuals are almost always normal in every significant clinical sense. When they are younger, spastic diplegic individuals typically undergo gait analysis so that their clinicians can determine the best assistive devices for them, if any are necessary, such as a walker or crutches. The main difference between spastic diplegia and a normal gait pattern is its signature "Scissor gait"[1] — a style that some able-bodied people might tend to confuse with the effects of drunkenness, multiple sclerosis, or another nerve disease. The degree of spasticity in spastic diplegia (and, for that matter, other types of spastic CP) varies widely from person to person. No two people with spastic diplegia are exactly alike. Balance problems and/or stiffness in gait can range from barely noticeable all the way to misalignments so pronounced that the person needs crutches or cane to assist in ambulation. Less often, spasticity is severe enough to compel the person to use a wheelchair; in general, however, lower-extremity spasticity in spastic diplegia is rarely so great as to totally prevent ambulation — most people with the condition can walk.Above the hips, persons with spastic diplegia typically retain normal or near-normal muscle tone and range of motion, though some lesser spasticity may also affect the upper body, such as the trunk and arms, depending on the severity of the condition in the individual (the spasticity condition affecting the whole body equally, rather than just the legs, is spastic quadriplegia, a slightly different classification). In addition, because leg tightness often leads to instability in ambulation, extra muscle tension usually develops in the shoulders, chest, and arms due to compensatory stabilization movements, regardless of the fact that the upper body itself is not directly affected by the condition.

moving on.

we’ve continued and will continue to visit our physio and occupational therapists at least once a month. if we (parents) or they (therapists) feel the need to increase the number of appointments scheduled - we’ll go ahead and schedule more. for now? the activities and exercises he participates in during his therapy sessions are similar to what he’s doing at home. ride-on toys, squat to stand exercises, kicking balls or bowling pins, exercises to really help out his core strength and quad muscles - these types of activities that he does in physio are similar to what he does at home. same goes for occupational therapy: anything involving his two hands together - sticker fun!, lacing shapes, opening plastic easter eggs, pull toys - he needs to get his right hand to work along with his left hand. and he totally has this ability, we just need to get him to use it and practice it more. if his right hand continues to stay clasped shut (which i've noticed has been improving as of late), he may be required to wear a splint - to keep his hand splayed to improve the muscle tone as well as his grasp.

his walking has improved but he still walks with a limp. he still falls a lot. some days are better than others. while walking he does not like to hold your hand (this silently and totally crushes me). but in my opinion (since he can’t tell me) i think he does this because he needs to have his hands readily available at all times. when he does fall, which is often enough, he uses both hands to stop his fall. okay. fair enough. but it still makes me sad that he won’t hold my hand.

alright. with the physical basics covered we move on to appointments. way back in the late winter/early spring of this year we noticed ozzie (then 19mos) hadn’t met the milestone for walking. we all chalked it up to a number of excuses, “he’ll walk when he’s ready.” or “oh he’s having more fun crawling around on the floor!” or “he gets to where he needs to, faster! by crawling.” when he was 20-21mos we visited a developmental clinic being held at an early years centre in our city. from there we were referred to our lovely therapists. during our first physio appt, our pt referred us to a developmental pediatrician (in may 2011). not having heard from the developmental pedi - i took it upon myself to see our family dr. who then referred us to a regular pediatrician. we met with him in august and he was a lovely man with a british accent. don’t british accents just make a person sound more refined and knowledgeable? i think so. but cerebral palsy isn’t his area of expertise, tho he was the one who gave us the diagnosis. he thought it best to get ozzie’s brain looked at and we were booked into a local hospital for an mri. he also put in a referral (requested by our pt/ot) to see a pediatric orthopedic surgeon - to make sure his hips and legs are developing normally. in the meantime we had ozzie’s hearing checked as his speech was somewhat delayed. he’s now putting words together in small sentences and though i don’t see it as a huge concern, we are on a waiting list to see a speech language pathologist.

the mri:

last friday was our big day at the hospital and it went well. however, 5.5 hours at the hospital you’d think i’d have time to read a few magazines, no? well, no. there were questionnaires to be filled out, papers to sign, baby-child to carry, to distract, to sing to. and then the sedation. gulp. having to physically hold down your baby-child so a mean lady with a sharp needle (ok. wait, wait, wait - she was an extremely lovely lady nurse) can jab his hand so medicine can go through his veins so they could see his brain - was not my favourite part of that day. seeing him in that hospital gown almost killed me. but not from cute. from sad. you don’t ever want to see your child in a little wee hospital gown. through it all, i have to say, ozzie was a trooper. when he finally woke up - he was a feisty one, trying to rip the iv out of his arm himself. cue: playmobil catalogue. that handy book helped me out many times that day. the only time i did read my own magazine (only one article btw) was waiting for ozzie to wake up. he was wobbly and woozy the rest of that day scarfing back some donut holes, blueberries and water on the ride home. the results came back. but not good or bad. just more unanswered questions. we are now being referred to a neurologist/neurosurgeon to fill us in as the pediatrician wasn’t up to snuff with reading mri results.

appts to come:pediatric orthopedic surgeon: wed. october 19thneurologist/neurosurgeon: hopefully same day as posdevelopmental pediatrician: april 2012 (no date booked as of yet) <--frustrating to the NTH degree. this is where in real life i swear a million swear words in foreign languages so my kids don't know what i'm saying, obviously, regarding this appt... urgh $##*%$&!_*$*@*!!!at this point we are guessing this began even before the day he was born. when he was just a bunch of cells, in utero. or maybe during birth? it was a completely normal birth. quick. but normal. from what i remember anyways. maybe we’ll never know what actually happened. to date: this whole ordeal has been the single most awful thing i’ve had to carry and now deal with. you go through a grief process of sorts at first. you have such grand expectations and dreams for your child. and we still do. he'll be and do whatever he wants to and we'll be right there beside him encouraging him all the way. but of course you have doubts and this lingering fear, which more often than not (for me anyways), happens the closer we get to his appointment dates. i really have to learn to just let go of it all and move forward. this is our new normal now.

we are lucky, we really truly are. there is so much good going on, with the day to day stuff. he's thriving in his environment surrounded by love and horseplay. on top of it all, ozzie's a loveable, creative, sometimes snuggly, very independent little dance machine. as his parents, we are here to guide him, encourage, laugh and cry with him, teach him, and ultimately love him unconditionally. and so far, this is what we’re doing. i couldn't imagine our days any other way.and if you made it to the end of my rambly post, thanks for listening, i really do appreciate the love.